Steve H.
Born 1950, Symptoms began around 50 YOA
Diagnosed in 2008 LGMD; OPMD diagnosis 2014

Because I’m adopted, I didn’t know much about my biological parents. I married in the 80’s and started a family. I had attempted to look into my health history but there was nothing in the adoption records. Also, my biological parents were not living. However, I did find a relative who mentioned muscular dystrophy (MD) on the paternal side, but I thought that was a kid’s disease.

I was a firefighter in a large city and in the middle of an active career. Toward my 50’s, I started feeling weaker, was it the job? I talked to my doctor and then saw a neurologist. He said it’s not MD, no answer! Other tests were done by my doctor but no answer. I carried on.

The weakness progressed. I went back to my doctor, more tests, no answer. I was sent back to the neurologist, and he then declared I have MD, LGMD. You had a good life, he said. I had to retire from firefighting.

For a few years I was still doing okay, mobility wise, but then suddenly my eyelids failed. Thankfully I had found a great neurologist in the VA System. She decided we needed to look further into this diagnosis. I was tested for MG and that was not it. She was able to get me to Boston for a blood test and definitive answer. It was OPMD! I was diagnosed in 2008, and had symptoms well before that. It wasn’t the job!

My OPMD has progressed, you can’t know what symptoms will progress and how severe. You make decisions and choices on guessing. I have had five ptosis surgeries. I will need the Slings next time, if there is a next time. I first used a cane for many years, then a walker and now a wheelchair. I can still use the walker inside my home. I have added grab bars all over the house. I have two stair chairs on the stairways. A wheelchair lift was installed inside our garage so I can get up into the house with it, and I can also use it as an elevator too. I bought a different vehicle to accommodate the wheelchair.

My wife quit her job to be home to care for me. I fall, the ambulance comes to help me up. I can’t get into other homes easily or sometimes at all. My swallowing has changed, my voice too. I am very careful eating. I need assistance getting in and out of bed and the shower, and at other times. I have modified my bathrooms as best I can. I can get into one car but not out, and the opposite in the other car. I am not independent any more.

It was just last year that I could go places alone, now that has changed. Fear is real too, what if I fall and get hurt badly! So, I stay home and stay as safe as possible. I am fortunate to have had many of these aides from the VA. I cannot imagine the costs to people who do not. I never imagined in all my years of firefighting and saving and helping people that I would need the help.